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MEA website question for February: Diagnosis - how long does it take? (UK only)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Jan 31, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    MEA website survey on the time taken to obtain a diagnosis of ME/CFS from a doctor:

    Why are we asking this question?

    We want as many people in the UK as possible to respond to this MEA website survey on the time it takes from the onset of symptoms to get a diagnosis of ME/CFS confirmed by a doctor

    Previous patient surveys have shown that many people face completely unacceptable delays in getting ME/CFS diagnosed which, in some cases, extend into years - often as a result of lack of knowledge by doctors on how and when to make a diagnosis

    Failure to make a diagnosis of ME/CFS can result in bad management, no management, a failure to obtain benefits or modifications to education or work routines, and an increased risk of the condition becoming more severe and prolonged

    This information will form a key item of patient evidence in our campaign to make both doctors and the general public aware of the need to make an early and accurate diagnosis of ME/CFS

    The MEA campaign - which will involve information being made available to both health professionals and GPs - will be launched in May as part of ME Awareness Week

    It is being funded by money raised in the Big Give Appeal at the end of last year

    Vote via the home page on the MEA website:
    www.meassociation.org.uk

    Website question with votes so far (2 hours):

    • About how long did it take from the onset of your ME/CFS symptoms to a doctor confirming a diagnosis of ME/CFS?
      • Less than 3 months (7%, 5 Votes)

      • 4 to 6 months (14%, 10 Votes)

      • 7 to 12 months (10%, 7 Votes)

      • 13 to 24 months (20%, 14 Votes)

      • 3 to 5 years (25%, 17 Votes)

      • 6 to 10 years (16%, 11 Votes)

      • Not certain (3%, 2 Votes)

      • Never been confirmed by a doctor (4%, 3 Votes)


        Total Voters: 69

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  2. *GG*

    *GG* Senior Member

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    Oh, so this is the RESULTS of the survey, right? Was going to ask if I should participate, since I am in the USA? I might have anyways :)

    GG
     
  3. Sasha

    Sasha Fine, thank you

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    @charles shepherd - you might want to put "UK only" at the front of your thread title, to restrict it appropriately. Not everyone will read your instructions! :)
     
  4. Scarecrow

    Scarecrow Revolting Peasant

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    No option for more than 10 years?
     
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  5. charles shepherd

    charles shepherd Senior Member

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    There is now!

    I'm afraid the website tool we are using removed the final answer option last night.

    All now corrected!
     
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  6. charles shepherd

    charles shepherd Senior Member

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    Thanks

    Sorted!

    C
     
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  7. Artstu

    Artstu Senior Member

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    I'm between the 14 months and 3 years, why the gap?
     
  8. charles shepherd

    charles shepherd Senior Member

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    http://www.meassociation.org.uk/201...part-in-our-on-line-survey-for-february-2016/

    We have had to amend the quick survey this morning because, when we posted it last night, we omitted a key question that asks how many people have had to wait over 10 years for a doctor’s diagnosis. We apologise for this and ask for those who took part in the survey overnight to come back to it again today and do it once again.
     
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  9. charles shepherd

    charles shepherd Senior Member

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    Apologies - Tony is having typo problems this morning. BP 4 should read 13 - 24 months and is being corrected!
     
  10. Artstu

    Artstu Senior Member

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    That still leaves a gap between 2 and 3 years.
     
  11. charles shepherd

    charles shepherd Senior Member

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    Corrected - I'm afraid we have a lot going on at the MEA this morning

    The MEA Quick Survey

    • How long did it take from the onset of your ME/CFS symptoms to a doctor confirming a diagnosis of ME/CFS?
      • Less than 3 months (7%, 1 Votes)

      • 4 to 6 months (14%, 2 Votes)

      • 7 to 12 months (14%, 2 Votes)

      • 13 to 24 months (14%, 2 Votes)

      • 3 to 5 years (21%, 3 Votes)

      • 6 to 10 years (0%, 0 Votes)

      • Over 10 years (21%, 3 Votes)

      • Not certain (7%, 1 Votes)

      • Never confirmed by a doctor (0%, 0 Votes)


        Total Voters: 14
     
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  12. Sasha

    Sasha Fine, thank you

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    I've re-voted.
     
  13. Artstu

    Artstu Senior Member

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    I will vote once you cover that gap between 2 and 3 years.

     
  14. Sea

    Sea Senior Member

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    Sadly, simply being diagnosed is not enough to overcome this. It took me 7 years to get a diagnosis, but in 29 years of illness all I've had is bad management or no management.
     
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  15. crosser

    crosser

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    im severe and bedbound and still havnt got diagnosed.. my cfs team say its anxiety... so wont give a diagnosis...
     
  16. Aurator

    Aurator Senior Member

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    I'm in the UK and have only been ill for three years but I share your view on this.

    I was offered no advice on management before or after diagnosis and have not seen a doctor re ME/CFS in over 18 months. There is nothing my GP will offer me if I do see him; he has already told me as much.

    So, like most I'm just left to flounder. Meanwhile I see friends and family members getting effective treatment for all sorts of comparatively minor problems, which are taken seriously and receive their little portion of NHS resources to sort out.

    No, there's not much difference for me between having a diagnosis and not having one. If I were a child with ME/CFS I'm pretty sure I wouldn't want to be diagnosed at all if I had any awareness of the increasing monopoly of children's care by people unashamedly pushing a psychiatric agenda to patients who are assumed to be just fatigued, and largely so because they are depressed or school-phobic.

    The whole state of things for PwME is a mess, and a lot needs to be broken up and done away with before anything or anyone is going to mend.

    BTW, why are MEA website polls always laid out on the site in such an idiosyncratic way? The top of the home page mentions the poll, provides a link to it, and when you click on the link it takes you to another page that talks in more detail about the poll. But there is no poll there. The poll turns out to be back on the home page the link sent you from, right at the bottom, but there's no signpost to it; you just have to know it's there by experience. It's very odd.
     
    Last edited: Feb 1, 2016
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I'm surprised at people being diagnosed before 6 months, as I thought that symptoms had to be present for at least 6 months.

    BTW, I wonder whether it's appropriate for the ME Association website to have those horrible, unpredictably-moving images when so many of us find that these adversely affect our eyes and brains. I have to block off such moving images with bits of card, etc., or try to get an adblocker or NoScript to block them, or change the page to 'No Style' or just avoid the site to avoid my brain being scrambled and my eyes hurting.
     
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  18. meandthecat

    meandthecat Senior Member

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    At least my doctor talked to me prior to diagnosis. She gave me a strange look and asked if I wanted a diagnosis, if I had known what I know now I would have refused to go anywhere near a ME clinic, and maybe if she'd clued me in a bit.
    I got diagnosed with CFS, which is just the sound of the lid closing on the bin they dumped me in ( clinical waste?)

    My doc left for Australia and now they either ignore me or shout at me. Diagnosis did me no good
     
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  19. crosser

    crosser

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    why was the m.e clinic so bad for you???
     
  20. JoanDublin

    JoanDublin Senior Member

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    Diagnosed under what criteria? Oxford? Fukuda? CCC? ICC? Big difference. Otherwise we are still talking about a whole pile of different illnesses
     
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